Hi, this is my first post here, I'm a 17 year old male and I was born with lymphedema in my right leg. I've perused through a couple of the articles in this forum and they made me wonder, if I have kids someday, what is the probability that they will get lymphedema?

Mine started when I was a baby. My parents say that my leg was already swollen when I was born and I was diagnosed only weeks afterwards. None of my relatives have LE and nobody can remember any deceased relatives with any swollen limbs.

Is there a test that I can take, at some point in my life, to determine what the probability is that I will pass it on?

I don't mean that these odds would determine whether or not I have children, but it would be nice to know what the odds are.

I have familial hereditary lymphedema ... just like Pat ... we call it Milroy's Disease or Milroy's Syndrome ... some say that it should be present at birth as it was in Pat ... but in my family it often isn't present at birth .... none of 5 active LE sufferers in the last 3 generations had it at birth .... we've all required some sort of injury trigger before it became active .. the 2 in generation 4 we don't have information on .... they were born over 120 years ago.

Now I'm no geneticist. Not even a doctor but I'm a keen observer of our family and how Milroy's has worked in it ..... it seems to work this way (though the doctors in the family tell me this is may only be co-incidence). Whenever the father has had active Milroy's their

sons, haven't had Milroy's even if they had plenty of triggering events BUT their

daughters did with the POSSIBLE exception of one .... all 3 of my father's daughters have it ... 2 active (had triggers) and 1 inactive -- no trigger

It seems to me and I may very well be wrong .... but I think the gene, in our case at least , is X linked .... that is the gene is attached to the X chromosone only.

Males, of course, have XY chromosomes and females XX ... so if the gene is attached to the X chromosome then a father can ONLY pass it to his daughters .... and a woman has a 50/50 chance of passing it to ALL her children regardless of gender . In our case, my brother didn't get LE but we girls did.

When my 3 sons were born, 2 of them became active LE sufferers (they had triggering events) BUT the 3rd isn't active despite many, many more triggering events than his brothers i.e. he didn't get that X chromosome ... he got the other one with it's own nasty genes!! My active sister has no children and the inactive one seems to have passed it to 1 of her 3 children (2 boys and a girl). My brother, with 2 sons & a daughter, naturally enough hasn't passed anything on.

When one of my active LE sons asked me about the chances of him passing LE on to his children I told him ....

I'd say your sons getting it is highly unlikely but your daughters getting it is almost certain. But is that a reason to deny them life?? No, we've all lived with LE and because we know how to manage it, we've minimised attacks and swelling. And if you do have a daughter you'll be paranoid about her feet and lower legs from the day she is born so the chances of LE becoming active are minimised and anyway I'm a female with LE and I'm glad I was born.

My father said that if he'd known he was likely to pass it on he wouldn't have had children .... I of course was the child he was talking about at that time (my sister hadn't become active) ... and that cut me to the quick ... LE or not I love my life and I'm glad I was born. Besides even if our genes were perfect and we couldln't pass anything one there's still no guarantee the child would be perfect. Nothing is guaranteed in this life.

I hope my thoughts on this have helped you ... lots of good vibes coming your way